SurvivorA word I’ve never considered to be part of our Duchenne world.

Joyfully, we all know and embraced a survivor. Whether from a brutal illness or a strong warrior finally coming home.

The St. Jude Commercials (love) tears me up that 1 of 5 children with cancer will not survive.

In the Duchenne world, 5 of 5 children with Duchenne will not survive. Since our diagnosis, day one, has never been about survival.

This year we had the honor of raising gobs of money for Duchenne Research through our various events, our biggest event, the Picnic in the Park. Our spot on Board of Directors approved the disbursements of these funds to PPMD to fund CRISPR(Cas9). This research is more than medicine, it is technology.

Gene Technology

I finally found an hour to listen, really listen to this webinar hosted by PPMD in December.

Listening to Dr. Olsen, it was difficult not to weep. As always, these education pieces relive our journey – from day one diagnosis to the future plans Duchenne has for Owen and his sweet young body. It is always painful to listen to our Duchenne reality.

Though my tears turned quickly into tears of joy listening as Dr. Olson said these words that made my heart stop beating for a split second……this technology is the opportunity to ‘end this disease in its tracks.’

That’s right

End Duchenne

I let this technology soak in throughout the day and as I drove home that night, I heard in my head, over and over…….

Survivor…..

Praise God that perhaps in Owen’s lifetime and all our current and future generations, we can know and embrace a Duchenne Survivor.

Please listen to this webinar, this technology, this HOPE - Please listen by clicking herePlease support our efforts in 2017, we have several family friendly events to help us constantly fund the path to finally derail Duchenne.

Please read the PPMD News release from today, helping us all understand this amazing pathway to surviving duchenne.